Should I Get off Thai Thiroyd for my Endo Appt - Thyroid UK

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Should I Get off Thai Thiroyd for my Endo Appt

Hello -

I've been on self-prescribed Thai Thiroyd (recently went up to 10 grain, I know this is a lot), for about a year. I have a diagnosis of Hypothyroidism, but all my labs were within range. Still Thai Thiroyd has worked great for me, but I would still like to get a professional treatment, which I finally should be able to do (I have health insurance now).

My endo appointment is on September 25th, so a month from now. Should I get off Thiroyd for this appointment or should I stay on? I have never been to this new doctor, so I have no idea what to expect and whether I will get any real help. Last time I attempted a treatment by a specialist I was out $500 and was pretty much ridiculed.

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I think it highly unlikely you'd get a diagnosis taking 10 grains of NDT. When did you last have your levels tested? That's 380 mcg T4 - so even with the T3 your FT4 is likely to be very high. And, 90 mcg of T3 - which isn't so much in the greater scheme of things, but could give you a very high FT3, and definitely a suppressed TSH. How could they make a diagnosis given those results? So, you would definitely need to come off it.

On the other hand, is six weeks without it long enough to get your levels back into the normal range, let alone in the right place to get a diagnosis.

The half life of T3 is about 24 hours. Which means that 24 hours after taking your dose, you will have half the amount left in your blood. So, it would take about 9/10 days to get the exogenous T3 out of your blood, which is good. But, most doctors go by the TSH. And, there's no way of calculating how long that would take to come back up. If it comes back up. By taking such a huge dose for such all that time, you could have down-regulated the thyroid/pituitary axis. So, it's a bit of a gamble, really, isn't it.

If your labs were in-range, how did you manage to get the original diagnosis of hypo, just as a matter of curiosity?

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Agreed. The original diagnosis was by ultrasound - the thyroid gland had deteriorated and had holes in it, the doctor said it looked bad and that there was definitely something wrong with it. He thought that my symptoms were consistent with hypothyroidism. The last thyroid related test I had randomly only for TSH and T4 as part of other tests, while I was on 10 NDT.

The TSH was 0.06 MCIU/ML (0.39-4.08)

T4 was 0.67 NG/DL (0.58-1.64)

I have a month to come off it and see what happens. At that point I will need to be checked in with relatives as I am not going to be functional before this appointment. It's definitely a gamble. I am definitely terrified.

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Well, that T4 isn't too bad - but was it FT4 or TT4? How long ago was that test done?

But, as I said, it's not the FT4/3 that is going to be the problem. It's the TSH. And even that wasn't as low as I expected, given your dose.

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Thank you! It was T4 Free. Agreed that supressed TSH is going to be a problem. My natural TSH was in the normal range, healthy by all standards, but I don't have a record of it now. I remember it being right in the middle or slightly lower.

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Do you have Hashi's?

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I do not think so, I did not have antibodies, I recall. It's been a couple years since that testing. After watching the HBO drama Chernobyl, I believe my problem is from Chernobyl. I was not directly affected, but I think our food supply was contaminated. I was 6, when Chernobyl happened and we lived in Riga, Latvia. There are studies out now about the children with thyroid issues from Chernobyl and that's the only thing that makes sense.

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Ah, I see. Even so, you cannot rule out Hashi's on the basis of one negative antibody test. They fluctuate.

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This is good to know. I am cautiously optimistic and hope that I could get some help this time around. I am pretty sure my adrenals are also a problem as the last time I tested random cortisol was not even in the range (super low). Getting proper help has been so difficult.

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Yes, it often is. I didn't have any trouble getting diagnosed, but after diagnosis I couldn't find a doctor who knew how to treat!

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It's so frustrating and it's so scary. The only doctor that ever wanted to help me was a psychiatrist :)

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Question is: how did he want to help you? Did he offer you T3?

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No, haha! I wish! They offered Strattera and adderall. It helped to a degree. I don't take them anymore, though.

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OK, so that's why he wanted to 'help' you! It wasn't really help at all.

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Hi

Can you recommend where to get a adrenal and cortisol test from ? Is there any good websites not to expensive?

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My cortisol test was random and it was a part of a yearly physical a couple years ago. Not sure how to go about getting one, sorry I couldn't help more.

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Hi how are you feeling on 10 grains ? With very suppressed tsh ? As I have just been in this situation with it being 0.03 and felt hyper and not well so I read an article that stated if t4 gets below 4 it's very serious and there are 50% chances of mortality so you need to reduce your medication it's very likely your very over medicated and gradually come off it for your appointment.

Your tsh should be around 0.5-1.5 to feel ok and maybe a little supressed by not in the 0.00 area

And T4 should be mid range say around 13-17

And T3 around 5-6.5 top of range

Read this article especially the heading Epidemiology

My T4 was 6 at one stage and I was severely ill but I wasn't medicated at the time due to not being to get the right meds medicated but you still need to bare in my mind your levels and find out a proper diagnosis

ncbi.nlm.nih.gov/books/NBK4...

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Merlio18 I think you are misinterpreting that article. Of course, in the absence of any treatment, having a severely reduced level of thyroxine for any reason, non-thyroidal or otherwise, would put an untreated person at risk. But not if they are ingesting adequate exogenous T3 in whatever form. Not only do many people on mono-T3 treatment manage very well with the resultant reduction in FT4 levels, but many of the adherents of Paul Robinson's protocol, actively seek it. If someone is well on their chosen form of T3 treatment, and not over-medicated when judged by hormone levels and symptoms, it would be perverse to stop it. Some people feel well and don't concern themselves with a low FT4 in that situation, others less so, and need to supplement. Likewise, it is not the case that everyone's TSH should be between 0.5 and 1.5 to feel well, as you say. An individual's TSH should be wherever it needs to be for them to be well, which may be above or below that interval. The set of hormone levels you describe are general guidelines for people taking mono-Levo; it isn't the case when you introduce T3 in to the picture.

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Ah right I wasn't sure if it was just in general or not not to have a T4 level under 4 but when I went to a n e they said I have to reduce my dose of NDT as my tsh was 0.03 not sure of my T4 level as they said I could have triggered a thyroid storm if it gets any lower and I thought on T3 you would still need to have T4 around mid range which is what I have read in some articles, I also have Paul Robinson's protocol books the orange one I don't have the other yet but they are very informative.

Thanks for clarifying

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I feel great on 10 grains of NDT, but I am also taking this increased dose after a stressful event - a miscarriage. Before that I was taking 5 grains of NDT and that dose was perfect. So this dose might be temporary. I never really had any hyperthyroid symptoms from NDT at either 5NDT or 10NDT dose.

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Ah right that's interesting as 5 and 10 grains seems alot with one grain being equivalent to around 38mcg t4 and 9mcg t3 so sorry to hear about your loss, I was hyper on 2 pills with tsh of 0.03, and use to be on 50 levo and 5/ 10 T3 alternate days, have you ever been on levo? Or have you not been properly diagnosed?

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Thank you! I've never been on levo, but I was diagnosed by a MD, just not treated.

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When I went back onto NDT, think about 4 years ago now, the new Endo was from Romania so very used to NDT and my first test I was slightly over range so he told me to miss a couple of days then reduce to 1.75. Think I was on 2.5 but it's a long time ago now but expert was spot on with my dose change. He told me that if correctly medicated then TSH should be suppressed 0.01 or even zero, FT4 can fall but ideally not below half way through range but FT3 should be high, in top quarter, but never over and so I've always stuck with that and feel good. Sadly he was only here for a year.

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That's interesting a n e told me my tsh at 0.03 I had to cut my NDT by 1/2 a pill so instead of 2 down to 1.5 what dose where you on when you took levo?

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125/100 on Levo. I think you must make sure though you get an FT3 reading in future on NDT. That is the only accurate reading for you FT4 can fall in its range and TSH will be suppressed.

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Hi

yes I know I needed my T3 levels doing they where the most important I wanted I stressed this to the a n e doctor incase I had to much t3 in my body but

I did request it my T3 and rt3 at a n e and the doctor said he would do them and then I waited like 4 hours and then he gave me the results and I said where is my T3 ones and he said he had to get them agreed by an endo and they refused !! How ridiculous I waited all that time oblivious I was really annoyed

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Wow, 10 grains! You may well end up having to self treat if the doctor doesn't understand about NDT and tries to treat you according to your TSH. Your results are normal for someone on NDT - low TSH and pretty low FT4. If you feel well now I would try to resist any huge changes in medication because you will almost certainly feel worse than you do now. If your doctor does understand about NDT then he/she should be able to cope with your results as they are and monitor you.

The worst that can happen is that the doctor looks at your low TSH and declares you to be hyperthyroid and tries to put you on Carbimazole!

Best of luck, and be prepared to try a few different doctors if necessary until you find one who understands.

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Thank you for your message, I will keep that in mind.

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It's not good to make sudden changes.find what you were doing before and where you were.

Then keep going as you are and when you see your new endo find out where you are now . Has there been any change or improvement.

? If you don't know make 2 appointments spaced one month apart one on it and one off it. Keep a record of what's going on with all the changes and dates.

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Unless this endo prescribes NDT or is just a progressive doctor(LOL), IMO, he or she might be freaked out by the amount you're taking and low TSH. If you believe you're over medicated why didn't you begin to slowly reduce your dose over the course of six to eight weeks before consulting with a doctor? Unless this doctor was recommended by someone on NDT, my sense is that the appointment might not go well. Hope I'm wrong.

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Ugh, yes, I am afraid of another failed appointment and wasted time.

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I understand your trepidation. I self treat and the two doctors I see(primary and a urologist) are forward thinking and understand why I self treat. My urologist told me he has a friend who takes 6 grains, daily. 10 grains might be on the 'fringe' but if that's what you need, then that's what you need.

Like many on this forum, I've dealt with endos over the years, as well as clueless primary care doctors. 'Frustrating' is a mild term. But be prepared for the possibility that this endo might be another cookie cutter doctor.

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I believe the TSH reading is irrelevant once you begin taking T3, although I could be wrong. If you take 10 grains of NDT & 1 grain has 38 mcg of T4 & 9 mcg of T3, that means you are taking 380 mcg of T4 & 90 mcg of T3. Being as T3 is "said to be" 3-4 times more potent than T4 that would mean you'd have at least the equal of 270 mcg of T4, which adds up to equaling a total of 650 mcg of T4. That blows my mind that you could take that much without going hyper or ? whatever? Chernobyl was in 1986 so that's 33 years ago, so you must be 39, correct? If I may ask: Are you a man or a woman? You said you've been on 10 grains for a year; so did you start with what? 1 grain, and then add a grain a month, more or less? Although I don't take NDT, I've been considering trying it but I'm on 75 mcg of T4 and 30 mcg of T3 and feeling pretty good at 73. Taking that much medication on your own, shows a great deal of courage & I imagine anyone who reads your post must be (very) curious and feel as sympathetic towards your journey, as I do I would be very interested in knowing how you make out. . May peace be with you, as you go forward, & with us all.

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Thank you for your message and encouragement, yes, I am a woman, 39 years old, that is correct:) The first time I had symptoms I was about 9. I started with 1 grain NDT without much results about a year ago, when I was 38 and then went up to five NDT a day in about two weeks and stayed at that dose for a good 9 months, and that time was very good and I felt and was healthy; I had gotten pregnant in April, but miscarried within two months and about a week or two after the miscarriage I felt severely hypothyroid and went up the 10NDT. I think as I am recovering from this stressful event I will be able to reduce my dose again. I never had any hyperthyroid symptoms from taking NDT except for maybe the third day I took NDT at the beginning, I had a hypoglycemic episode, which was sort of a jumpstart to my metabolism, at which point I started eating regularly (I had struggled with eating and had sort of an eating disorder from hypothyroidism, not being able to eat without gaining tons of weight). The only time I've had hyperthyroid symptoms in my life was when I was about 10-11 and then gradually it turned to hypothyroid and stayed hypothyroid for 25 or so years.

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Did you know that all pregnant women get a certain amount of hypothyroidism during pregnancy? This is because the baby depends upon the mother's thyroid to support his/her needs and during pregnancy the baby's brain is being developed due in much part to the mother's wellness or sickness. Many doctors understand this and, it's to my understanding that some/many do not. Anyway, I just mention that because you said you had a miscarriage. Sorry to hear that. I'm sure you can overcome this, however, as you are still young enough to regain your health, with help by taking the proper thyroid hormone meds. I don't believe you had an eating disorder; it was hypothyroidism itself. I gained 40-50 pounds myself the first time I was diagnosed, 26 years ago and once on T4, shed it quickly. I was great for 25 years and then kind of crashed, as no doctor had really ever done anything to increase or reduce my dose, which began at 88mcg of T4 and remained thus for the entire time I was on it, about 25-years. So, when I finally ended up seeing an endo, which I didn't even know there were any, thyroid specialists: aka endocrinologists, because no one ever told me. The GP's and other medical doctors have not even the slightest imagination about endocrine problems and are taught in med school that T4 takes care of it … period. This is the influence of huge amounts of money contributed to medical schools by Big Pharm; they even own, yes own, some medical schools and their “influence” even prints medical books on endocrine systems, where they always praise T4, as it is the cheapest pill to make, whereas T3 is much more apparently “costly,” so they push the T4. Many GP's refuse to prescribe anything but T4 and have no idea about anything else, as far as thyroids go. I hope you can now become well by finding your proper dose; it is a horrible fact that too many doctors are so ignorant on this disease and so many of us suffer because of it. Take heart though, there is a cure ahead for you, I'm sure. You should always take someone with you when you visit your endo, or any doctor, GP or otherwise, it's always good to have a witness, and you should always make your decisions carefully, depending upon how you feel and react to any and all medications. It is hard but there is no other alternative in this cruel jungle of a “civilized” world. And, may God's peace be upon you and yours as you go forward on life's complicated journey.

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